I HAVE TAKEN SO MANY DRUGS TO TRY AND COPE WITH BFS. I TOOK ELAVIL, TRAZADONE, XANAX AND PAXIL. I AM PRESENTLY TAKING PAXIL AND I FEEL LIKE COMPLETE GARBAGE, I HAVE TREMORS, I AM NAUSOUS. I HAVE ALSO GAINED 5 POUNDS. I HAVE ONLY TAKEN PAXIL FOR THREE WEEKS AND I HATE IT. I GOT OFF XANAX BECAUSE I WAS WORRIED ABOUT ADDICTION. I THINK I MAY GO BACK ON UNLESS SOMEONE HAS A BETTER SUGGESTIONS. THE XANAX REALLY SLOWED DOWN THE TWITCHING.

IF AN ANTI-ANXIETY/DEPRESSION, SLOWS DOWN THE TWITCHING TO THE POINT THAT IT ONLY HAPPENS ONCE A DAY, DOES IS THAT PROOF THAT IT CANNOT BE ALS.

In my opinion you need to be on some kind of anti-anxiety pills until you can come to terms with your fear of ALS. If you should become addicted to Xanax, there are ways to wean yourself off...but it sounds like you are so wound up right now that life is just miserable for you. Sometimes it takes SSRIs like Paxil a full month before your body gets used to it. Ususally it is about three weeks. If you aren't happy being on it, there are other anti-depressants you can try. What you really need is some good therapy to deal with your stress.
I know it is hard to accept while you are still twitching, but after 4 clean EMGs you do not have ALS. I am truly sorry to hear that you are having such a hard time, my heart goes out to you. I think being filled with anxiety all the time is an awful way to live. Look at it this way...if you were to find out one day that you were dying of some terminal illness, would you want to look back and say "Gee, I sure am glad I wasted all those years of good health worrying!"?
I read something really relevant to your situation the other day. It was about our realities. How we feel about something is determined by what we believe to be true. WHat we believe determines what we think. What we think may or may not be based in reality. If you want to change the way you feel about something, you need to change how you think about it. And therefore we have the power to change how we feel. Well, that was the gist of it.\
Good luck!
~Jen

It seems like different meds work for different people. When all this started for me, I tried many different things including xanax. I think the one drug that helped me for awhile was klonopin. A lot of people have talked about the issues with getting off the drug but I didn;t experience any such problems. I found that the klonopin would help me sleep at night and I was better able to handle things during the day. The good news is that after some time, and maybe a lot of time, you will slowly get more used to the twitches and they won't bother you as much.

You asked a really good question which is that if these drugs help the twitching then can the twitching be ALS? I am no doctor but it would seem to me that the answer is absolutely no! Remeber that twitches are only ONE symptom of ALS. The more important symptom is weakness...something your neuro would have picked up on and ALS is NOT what you have.

I hate to be the bearer of bad news here, but I do read an ALS forum, I can't help myself. Some people there say they take xanax type med's and it helps with the twitching. That in itself still doesn't mean we have "bad" twitches.

You need some help for anxiety. BFS won't hurt you physically but it can seriously damage your mind if you let it. Anxiety makes you get everything out of proportion and distorts your judgement. Thats why you need to leave the diagnosis to the experts.

I do feel for you - your symptoms are so similar to mine - and just because BFS is benign doesn't mean it isn't a real physical illness. I am absolutely sure it is. So don't expect it to disappear today or next week - it may do in its own time but it may well not

I suggest you stop reading ALS sites, and looking for quick fixes - tablets etc- I don't think there are any. Noone here has found any. -Leave the diagnosis to the experts. I think this condition is something you haveto learn to live with.

Who cares if SSRIs help people with ALS - you don't have it so its irrelevant to you.

You need some help for anxiety. BFS won't hurt you physically but it can seriously damage your mind if you let it. Anxiety makes you get everything out of proportion and distorts your judgement. Thats why you need to leave the diagnosis to the experts.

I do feel for you - your symptoms are so similar to mine - and just because BFS is benign doesn't mean it isn't a real physical illness. I am absolutely sure it is. So don't expect it to disappear today or next week - it may do in its own time but it may well not

I suggest you stop reading ALS sites, and looking for quick fixes - tablets etc- I don't think there are any. Noone here has found any. -Leave the diagnosis to the experts. I think this condition is something you haveto learn to live with.

Who cares if SSRIs help people with ALS - you don't have it so its irrelevant to you.

i hope this is of some help

Rich

RICH,
AM I BEING OBCESSIVE, I THINK I AM, BUT UNFORTUNATELY, I AM UNABLE TO STOP THINKING ABOUT ALL THIS, EVERY TIME I TRY MY FOOT TWITCHES, THEN MY HAND, OR MY ANAL MUSCLES, MY THIGH, ANYWHERE YOU NAME IT. I TRY NOT TO THINK I AM DYING BUT THEN A TWITCH COMES, AND IT IS A CONSTANT REMINDER THAT THINGS ARE NOT WHAT THEY USED TO BE.

SORRY, BUT I THINK IT IS GOING TO TAKE A WHILE FOR THE OLD KERRI TO RETURN.

Sorry for the delayed reply- I have been away. I am weaning myself off this site now - I have been reading it for a year + and I need to do this although I will visit from time to time.

Are you being obsessive - yes definately. Like many people here. Like me. Its a natural stress reaction. And your judgement gets seriously distorted.

You have to break the cycle - especially you have to stop reading ALS sites and internet sites with dubious medical information. I ws lucky - my wife and two young children helped keep me sane. Now more than a year later - I am definately better. I had all the symptoms you describe and quite severe muscle pain to go with it. I still twitch a bit - so what - the rest of it is better. Its benign.

For what its worth - and i am no expert - I am convinced this is a real physical condition - its not in your head. You will twitch today, tomorrow next week and probably next year. And you will get other symptoms. And if your experience is like mine you will get symptoms that really disturb you. So what? A twitch today means nothing more than a twitch yesterday. Don't expect it to go and you won't be disappointed.

But don't think that just because you have real symptoms that it means you have a serious disease. You have seen doctors had emgs etc and they have told you you haven't. I am sure theyare right. and you have what many people on this site have.

I would consider some help for your anxiety - and get lots of sleep. That was the key for me. I stopped all the drugs, SSRIs and most of all I stopped reading the ALS sites. The internet is full of rubbish and you and I have no real idea whats right and what isn't. I would leave that to the experts.